Blessings and Challenges (Joan, Part I)

I've been gone for a long time. There is so much to write. It's one of those situations where you have so much to say that you say nothing for a really long time, because you want it to be Right.... and that can be paralyzing.  

This was going to be an entirely different post, before. This was - a while back - going to be a post about eating a modified Paleo/Keto diet and having unexpected health benefits as a side-effect. I had it drafted. But it's not that.

And it's going to be long. You've been forewarned. 

Seriously, you don't have to read this. You can just ignore this and wait for my next, more homestead-y post. 

NOTE: If you'd like to jump to a list of ways you can help families in situations like ours, click here

Still here? Ok. Welcome. Please join me on a journey back.

I always wanted a big family. As the eldest of 6, I felt like 6 or 7 kids would be just perfect. And to my mind, there would really be no reason that would not happen. I’m the boss of my body, right? I'm in charge of my family planning... right? It was fairly straightforward to conceive our first four, and I had it all scheduled. In May of 2012, we started trying for baby #5. Nothing. The months stretched on, and I began going for testing in May 2013. As I wrote in 2014, I was finally diagnosed with PCOS, but I wasn't willing to give up, either.

I tried different versions of a PCOS diet, and while I felt better eating that way, I still wasn't
having a baby. I still used a pregnancy test almost every other cycle, sure that something would "work."

It took me a long time to come to terms with the fact that I was unlikely to conceive again. After a few years, I started giving baby things away. At first I told myself it was just to free up space in the house and that we would replace them when needed. Then, I realized that I was giving them away because it was over. We had the children we had. This was part of a Plan that was bigger than me. 

I reminded myself how blessed I was. How wonderful our family was. How fortunate I was that we had our children young, before my reproductive system closed up shop. And as I said at the end of that post in 2014, it was time to embrace the plate of life, whatever was served. I finally started to recognize that I was exactly where I needed to be, and that - ultimately - God was in charge of my fertility, and that nothing is by accident. 

And so I started to move on. I put my heart into things. I was so so thankful for the children I had. I reminded myself to not be selfish when those around me conceived easily, tried to be fully joyful when all my sisters had babies in 2016. Boy, how I loved on those babies! In time, I was happy, and thankful, and at peace. Though there was a little part of my heart that always ached, I accepted that this was how it would be. And on the plus side, it was nice not worrying about tracking my cycle, and just letting that be.

In May 2019, we went camping with friends for the long weekend and had a total blast. My
period was late, but that's not too abnormal with my PCOS. I didn't think much of it. Then, the following Monday and Tuesday when we were planting the garden, I found myself absolutely exhausted - to the point of tears. I'm usually really tired and foggy in May thanks to seasonal allergies, but this was the worst on record. I was, quite miserably, wondering if I should go get an allergy shot. On Tuesday night I remarked to Jim that my period still hadn't come. "Wouldn't that be funny," he laughed. I laughed too.

The next morning, I woke up at 4am. Wide, wide awake. I went to the bathroom and looked for that one last pregnancy test that I was sure I still had from years ago. I used it and set it aside to show results, looking up a YouTube video to remind me how to read that particular one. I resisted the urge to look at the stick. My heart was pounding and my hands shook. I didn't need to look. I knew. Deep down, I knew.

I looked at it. My breath hitched and my heart stopped, then resumed thumping, harder than before.

A plus sign.

I was pregnant. "Oh God, oh God, oh God...." It was certainly a prayer. "Oh God... how is this possible!?"

I crawled back into bed. Jim woke up and rolled toward me, instantly becoming alert as he read my face. "What's wrong?"

"Nothing! I mean, I think. I'm..." I thrust the stick at him. I couldn't process this. He stared. We cried. It was every emotion at once. What a way to rewrite our year (or, our next 18 years, actually). Incredible. What a gift. What timing. Holy moly.

I instantly felt so fiercely protective of this baby. I didn't want to tell anyone. I mean, I wanted to shout it from every rooftop, but I also wanted to keep this amazing gift all to myself. My baby.

Two weeks later, I had a very vivid dream about a baby girl named Agatha, who was destined to fight for the protection and dignity of women. I woke up knowing that a baby girl had taken up residence in my womb. I looked up St. Agatha, wondering where the name in the dream came from. I discovered that she was an early-church (231 AD) martyr who is the patron saint of rape/sexual assault victims (and more). Someone who stood up for what was right, and absolutely stood up for the dignity of women. I knew this baby was going to touch so many lives, and that she would great things. St. Agatha became my patron on the journey of my pregnancy. 

On Saturday, June 15, shortly after we had told the family we were six weeks along, the worst

thing happened. I started bleeding. The subsequent ultrasound on the 17th showed a tiny - and very much alive - little human. The relief was overwhelming. Then, the next doctor's appointment failed to find a heartbeat. I was once again stricken with fear. We were sent for another ultrasound.... and seeing that little wiggly baby again that day made me weep with gratitude.

This was the pattern that continued for the next few months. I would bleed, on-again and off-again, was placed on restricted activity, was constantly praying and bargaining with God.

Then, in August, the doctor's office called. My doctor was gone but the results from my last tests required that I come in as soon as possible. We went in, and a young doctor I'd never met before delivered the news. The screen showed that this baby likely had the neural tube defect spina bifida. The doctor suggested that we terminate the pregnancy and "try again". 

Some people really don't know what they are saying. 

While 90% of Canadian babies with spina bifida are aborted, that was not a consideration for us. I did want to know, but not so that we could end the pregnancy. I wanted to be able to have an intrauterine corrective surgery if warranted. The surgery is more commonly done in the US, but I knew I would find a way to access it here in Canada. (Later on, I would come to know two women who had flown across the country to have this very surgery, and who delivered very healthy, beautiful babies.)

I was referred to the best women's clinic in the capitol for further testing. In the appointment,
they weren't able to get a very good look at the bottom of the spine because the baby was lying across my cervix as if in a cradle - spine down. The doctor was fairly certain it was a false positive, at least for the worst type of spina bifida where part of the spinal column is actually outside the body. We went back again two weeks later, and they were able to confirm she was a girl... but still couldn't tell us anything else.... same position, same results. This doctor also asked us to come back again two weeks later. We did. Yet again, they couldn't quite see the spine because the baby was lying in that same position. I got the sense that this baby would be a calm but very stubborn one. We knew she was growing - a little small for gestational age due to a marginal cord attachment - but we still didn't know whether or not she had spina bifida. The next ultrasound was scheduled for October 23rd. 

Upon getting home, we gathered the kids to do our first-ever baby gender reveal. We handed each one a HERSHEY bar with SHE painted over with glitter paint. They were over the moon - watching their faces as they decoded their treat was precious indeed. I'll never forget the reaction of our 9 year old; she literally folded in half with all limbs extended in a jubilant shriek. 

On October 16, we went to the museum as a family and had a blast. I was really tired that night, and on the way home from choir I experienced a sudden jolt of pain in my abdomen. The baby somersaulted and I nearly passed out. My brother and sister-in-law, who were taking me home, detoured to the nearest health centre, and Jim drove the half hour to meet me there. The doctor gave me a shot of surfactant, just in case this should be a harbinger of early labour. He checked me and saw no signs of early labour, but suggested I go by ambulance back to the city, to the big hospital with the best NICU. I insisted that I felt fine, saying that I'd go in if I felt any change... and Jim took me home, with the doctor reiterating that it was against his recommendations. I vowed to take it easy. Hindsight is 20/20.  

On October 20th, my choir performed in Edmonton, and I got home in time for a late supper with my family and my brother's family. Jim made from-scratch enchiladas, and they were amazing. It was a good day! I was tired, but content. 

And then I felt an odd little pop. 

My water had broken.

Not a lot, not a flood, but enough for me to know... and there was a big blood clot, too. 

I had it in my head that if I was on bed-rest it would be ok. They could stop this... maybe stitch me up? It would be ok. It had to be. We waited a bit, my brother and family went home, and my big boys got home from a fun trip with friends to see the touring Marvel exhibit. They poured in the door with big grins and so many stories to tell, but I interrupted them, too-brightly saying that I needed to just run to the doctor to check something and that they could tell me in the morning. Their faces fell. 

We went to emergency in my hospital, an hour south-east of us. I kept telling myself it would be ok, that they stopped early labour all the time. Jim reiterated. It would be ok. Everything would be ok. We were so scared. I stopped at the after-hours desk, and they took my information, made a call, and sent me straight to Maternity. The first person I saw when they ushered me into the ward was an old friend - someone who had been on maternity leave herself... this was her first shift back, and she instantly put me at ease. It was getting to be pretty late. My doctor came in and proclaimed me a troublemaker, with an attempt at a smile... but the set of his mouth was grim. Suddenly, our reality became that much more terrifying. 

An ultrasound showed that our baby girl was still swimming around, her vitals strong. My cervix
was closed. Good. I breathed a little easier.  I sent Jim home to get some sleep, telling him that nothing would happen imminently, and he might as well get some sleep for what might come next. We had some time. They airlifted me to Edmonton, three hours away. 

It was such a long night, from ambulance to airport to plane to ambulance to hospital. Triage
took forever. I had been immobile on a gurney since 10 the night before, my tailbone was angry, I'd repeated the same answers to the same questions to each doctor, paramedic and nurse along the way, and I was exhausted and afraid. At 7am they finally got me into a room, and I was so thankful to finally be able to sleep... but wait, no, first another fetal non-stress test was in order. 

Ok, just a bit longer... and just as my nurse removed the straps and sensors from my belly, another nurse poked her head in my door. "Just in time!" she chirped. "They're ready for your ultrasound." It was strange being wheeled through the same women's clinic waiting room Jim and I had sat in over the past few weeks, everyone pretending not to stare. I had just been a woman in those seats, impatient at the long wait for my appointment, distracting myself with people-watching. Now, I was Exhibit A. 

The ultrasound was a relief. I still had a sufficient supply of amniotic fluid, and the baby looked fine. She was still in her favourite position, spine facing down to my cervix, lying transverse. They showed me where my placenta had abrupted, causing my membranes to rupture. It was small. There was hope.  When I was back in my room at 11am, I fell into the deepest sleep I'd had in weeks. 

Jim arrived that afternoon. We were visited by a neonatologist who described the risks of giving birth at 26 weeks, and the plan to keep this baby inside me for as long as possible. Every day we kept her inside was key. He told us that a baby at 26 weeks, one day gestation was going to do markedly better than a 25+6. He talked about the typical issues that usually affect surviving 26 weekers - blindness, neurological issues like cerebral palsy, chronic lung disease, necrotizing enterocolitis where the baby's immature digestive system literally rots and is often fatal. He listened patiently to my thousand questions, giving honest and full answers. It was terrifying. 

Bed rest! I could do this! I would embrace it! I could keep this baby IN. I mentally made a long
list of things I never had time to do at home. I would read, paint, write, pray... the list was exciting! I was sure it would be the best weeks ever. I would relax in the hospital, have a healthy but small baby some time in mid-December and be home for Christmas. 

Jim headed home. I had a lovely conversation with my nurse, and quickly made the connection that I knew her sister from many years before. My brother and his girlfriend visited and brought a pretty houseplant, and I responded to the many messages I'd received, and caught up on work emails. 

The next day felt like it ought to be Monday, but it was really Tuesday. My missed night of sleep had left me groggy and disoriented. I felt achy and crampy, and so tired. I tackled work emails, my dear friend from home drove in to the city and brought me lunch, and I FaceTimed in to my scheduled HR review. A friend stopped in with her two youngest children - both of them with chronic lung disease and one on portable oxygen. I filed the facts away, sure that if this lovely and gracious woman could handle her life with such outward ease, I could do it too, if I had to. God forbid. Another friend popped in with some snacks from Costco, and offered to run any errands I would need in the months ahead (and she stuck with that promise). I wondered if I would have so much love and support through this whole journey, or if it was just a first-day thing.

Mid afternoon, my nurse came to check on me and I mentioned the uneasiness I felt with the cramping. She did a non-stress test, which showed nothing of concern. "But," she added, "sometimes with a baby this tiny, the fundus isn't high enough to get a proper reading. If there are contractions, you might feel them without the machine noticing. You will know what we don't know. Keep track." 

That night, the cramping hadn't let up, and they were swinging in a noticeable pattern. And there was some bleeding now. As much as I wanted to ignore it and make it be nothing, I couldn't . The machine said its fine, I reminded myself. But it's not, replied my inner self. I asked the nurse to check again, which she did. The NST gave the same indication that the baby was just fine, and caught no real contractions. She got a doctor to come check me. His mouth pressed into a thin line. "You're 4 centimeters." My cervix, which had been firmly closed the day before, had changed its mind. My hopes evaporated. Never mind 'holding her in' until mid-December. There was no stopping it now. This baby was coming. 

I texted Jim to come in. It was 10:52pm. He was at my side by 1:25am, and there to watch as they gave me a bolus of magnesium to protect her brain. It made me feel flushed and a little bit nauseated. The bedside ultrasound showed that, as was her custom, baby was still lying sideways across my cervix. There was no way to turn her without hurting her, especially with so little amniotic fluid to act as cushion. They prepared me for a c-section. I worried aloud that they wouldn't have time, because the contractions were strong - and I was feeling pressure. The nurse cheerily patted my hand. "You're so early and babe is so small," she said, "that there's no head pressure on your cervix. These labours usually go much slower than what your norm might be." 

I asked again if someone could check me, knowing that it's hard to read pain levels of others, and knowing how quick my labours are. I got the sense that the nurses were inwardly rolling their eyes at me, but they obliged, and called the surgeon.

"She just wants you to check her, because she says she's feeling pressure," the nurse lilted as the doctor entered the room. The doctor took up her examination posture, smiling obligingly. Her reaction was swift and urgent. "Oh guys - she's eight centimetres. We've got to go NOW."

The next while was a blur. The usual set-up time in the surgery was cut short. As I curled up on
my side so the anesthesiologist could start my spinal tap, the sugar-coated nurse told me, "It's ok, honey! This is the worst part!" Trying so hard not to obey my body's instincts, through my gritted teeth I snapped at her, "I'm not worried about a needle in my spine. I'm worried about pushing a baby out sideways!" 

They strapped me down and positioned me for surgery, everyone working as quickly as possible. Instead of spending time swabbing, someone dumped an entire bottle of iodine on my belly. Instead of Jim sitting in a waiting room while they got me set up, they had him stand outside the door, because this wouldn't take long. Instead of taking half an hour to get the levels right for the spinal, the anesthesiologist gave it just a couple of minutes and said, "Now's not the time to be brave. Do you feel that?" He poked at something. I shook my head. He turned to the surgeon. "Go."

I couldn't feel my chest, or my face. Or Jim, holding my outstretched hand as I lay on the operating table. I could feel the pressure on my belly, and my body being jerked from side to side. And I felt like I was going to be sick. I prayed under my breath, surrendering, begging God to take care of everything. And trying so hard not to be sick... how would they put me back together if I went and did that?! I could hear the surgeon telling the anesthesiologist to give me more nitro to relax my uterus. His voice tight, he hesitated, saying he'd already given me (some amount I can't recall). She said I needed more. I could hear the tension in her voice, rising over Jim's encouraging words in my right ear. "Can someone get me something that can CUT!"  I just kept praying, the same words, over and over.  

At 3:23am, our baby girl was born. There was no cry, no jubilant, "it's a girl!" She was whisked into another room to be stabilized while they put me back together. Jim went with the baby. The surgeon popped her head around the curtain, smiling eyes in round glasses shining at me above her mask. "You probably already knew this, but your uterus is phenomenal," she began. "We got it out of you, but it was like a steel ball. I went through five pairs of scissors before we got in." She took a breath. "So, your baby girl is here and she is stable, but she's pretty bruised up. Your body just didn't want to let her go."

They wheeled me into the recovery room, and then wheeled over a gigantic, alien-looking plastic pod, my tiny purple baby nestled in the middle, limp, bruised, wrapped in what looked like thick cellophane, her face obscured by an oxygen mask. My mind couldn't comprehend what I was seeing. They asked me her name, but my fuzzy brain wouldn’t let me settle on anything. I still couldn’t feel my face. They took her away, someone gently explaining that her dad would go with her up to the NICU, and I could go see her later. Every so often a nurse would poke my clavicle, asking if I could feel anything. I could not, but I wasn’t worried anymore. Our baby girl was alive and ok and that was all I cared about. I could rest, now. Then I felt someone shake me, saying firmly, “TobyLauren, breathe in.”

Apparently the drugs in my system were more than I could deal with, and I was forgetting to breathe. It didn’t bother me, really. It was after 5 am now, and I was really tired. Breathing didn’t seem that important. I drifted towards the welcoming doors of sleep, and faintly heard strange beeping.  “TobyLauren... breathe in.” Thankfully, someone was there to remind me. Then I felt the oxygen slip over my nose - along with another reminder. I guess it doesn’t help to have oxygen unless you remember to breathe it. I had babysitters with me for a few hours, until I could feel my clavicle, and could breathe without my chest feeling so heavy. But as I slipped in and out of something like sleep, a new name framed itself in my brain. One that hadn’t been on our baby-name list for 15 years. Joan. 

Out of the woods now, I was wheeled to my room, and I slept.

At 8:30, I was helped into a wheelchair, and Jim took me to properly meet our baby. She was
wrapped in plastic to keep the moisture in her under-developed skin, and I was hyper-aware that touching her could hurt her. The nurse encouraged me to hold her hand. I reached through the isolette port to let her know I was there. Her tiny, delicate hand tightened on my finger. 

What a little fighter.

At 9:15am, Jim and I texted the family. 

“Please meet Joan Elizabeth Agatha. Joan for the two St. John feast-days bracketing her entrance, and for Joan of Arc, a feisty fighter. Meaning: 'God is Gracious'. Elizabeth for Oma; 'My God is Abundance'. Agatha for the fierce woman St. Agatha and all she stood for (and the fact she has been involved with this baby from the start), 'Good'.”

And there she was. Our tiny, 760 gram (1lb 9oz) little lady. The long road loomed ahead of us.

How to Help

For me, living at the hospital for 3.5 months was really hard and isolating. The support of others really got me through. I'll add some affiliate links to products that you might think of purchasing - any proceeds I earn will go to the NICU that housed Joan.
  • Having people pick me up for lunch or coffee and just get me out of there for a while was helpful.  That could look like walking through the mall or outside together just for a brain break. Taking mama out for lunch or dinner is also sometimes really needed.
  • Because I lived right at the hospital, and was in the NICU ALL the time, the friend who offered her downtown apartment for a few days was a lifesaver at one point. 
  • Food is helpful. It would get very expensive having to purchase every meal from the hospital food court. I mostly lived on energy bars and beef jerky, or whatever food people brought me. Frozen, reheatable meals or something home made that can be popped in a microwave, sandwich making supplies, etc are all awesome. I was delighted when one friend dropped off enough roasted chicken legs and veggies to last me three suppers. 
  • You’re much at your baby’s bedside all day every day, but sometimes can run to the food court for a bite or a coffee - gift cards to the food options in the food court are a really good thing.
  • One of the things I really appreciated besides people actually dropping off food for me was the SkipTheDishes gift card that all of the people from work got him together and gave us. It was nice to be able to get food dropped off and not have to worry about the added expense. 
  • Honestly, it gets so expensive with fuel, meals and sometimes accommodation. Visa gift cards are super helpful.  
  • I also appreciated friends who dropped off books and magazines, creative stuff like a sketch pad, planner stickers and pretty tape, lovely pens, a journal for writing down everything about baby's progress
  • Someone brought me a diffuser and calming essential oils which was amazing. 
  • Do they have other kids? Pets? Having a support network to help there is gigantic. Offer to take the pets/kids or make freezer meals for the family at home. 
When you have a micro like that, every cell in your body is focussed toward that baby and her needs and the risks and fears. It’s all-consuming. Having any other concerns/worries taken care of is a big big help. 

Supporting your local NICU

If you don't currently know anyone who has a preemie but you want to help out your local NICU, there are so many ways you can do that! Check with your local hospital to see what donations they are accepting right now, but here are some common ones: